Skip to main page content
U.S. flag

An official website of the United States government

Dot gov

The .gov means it’s official.
Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you’re on a federal government site.

Https

The site is secure.
The https:// ensures that you are connecting to the official website and that any information you provide is encrypted and transmitted securely.

Access keys NCBI Homepage MyNCBI Homepage Main Content Main Navigation
. 2024 Sep 3:26:e57827.
doi: 10.2196/57827.

Value of Engagement in Digital Health Technology Research: Evidence Across 6 Unique Cohort Studies

Sarah M Goodday  1   2 , Emma Karlin  1 , Alexa Brooks  1 , Carol Chapman  3 , Christiana Harry  1 , Nelly Lugo  1 , Shannon Peabody  1 , Shazia Rangwala  4 , Ella Swanson  1 , Jonell Tempero  1 , Robin Yang  1 , Daniel R Karlin  1   5   6 , Ron Rabinowicz  7   8 , David Malkin  7   9 , Simon Travis  10 , Alissa Walsh  10 , Robert P Hirten  11 , Bruce E Sands  11 , Chetan Bettegowda  12 , Matthias Holdhoff  13 , Jessica Wollett  12 , Kelly Szajna  12 , Kallan Dirmeyer  12 , Anna Dodd  14 , Shawn Hutchinson  14 , Stephanie Ramotar  14 , Robert C Grant  14 , Adrien Boch  15 , Mackenzie Wildman  16 , Stephen H Friend  2   4
Affiliations

Value of Engagement in Digital Health Technology Research: Evidence Across 6 Unique Cohort Studies

Sarah M Goodday et al. J Med Internet Res. .

Abstract

Background: Wearable digital health technologies and mobile apps (personal digital health technologies [DHTs]) hold great promise for transforming health research and care. However, engagement in personal DHT research is poor.

Objective: The objective of this paper is to describe how participant engagement techniques and different study designs affect participant adherence, retention, and overall engagement in research involving personal DHTs.

Methods: Quantitative and qualitative analysis of engagement factors are reported across 6 unique personal DHT research studies that adopted aspects of a participant-centric design. Study populations included (1) frontline health care workers; (2) a conception, pregnant, and postpartum population; (3) individuals with Crohn disease; (4) individuals with pancreatic cancer; (5) individuals with central nervous system tumors; and (6) families with a Li-Fraumeni syndrome affected member. All included studies involved the use of a study smartphone app that collected both daily and intermittent passive and active tasks, as well as using multiple wearable devices including smartwatches, smart rings, and smart scales. All studies included a variety of participant-centric engagement strategies centered on working with participants as co-designers and regular check-in phone calls to provide support over study participation. Overall retention, probability of staying in the study, and median adherence to study activities are reported.

Results: The median proportion of participants retained in the study across the 6 studies was 77.2% (IQR 72.6%-88%). The probability of staying in the study stayed above 80% for all studies during the first month of study participation and stayed above 50% for the entire active study period across all studies. Median adherence to study activities varied by study population. Severely ill cancer populations and postpartum mothers showed the lowest adherence to personal DHT research tasks, largely the result of physical, mental, and situational barriers. Except for the cancer and postpartum populations, median adherences for the Oura smart ring, Garmin, and Apple smartwatches were over 80% and 90%, respectively. Median adherence to the scheduled check-in calls was high across all but one cohort (50%, IQR 20%-75%: low-engagement cohort). Median adherence to study-related activities in this low-engagement cohort was lower than in all other included studies.

Conclusions: Participant-centric engagement strategies aid in participant retention and maintain good adherence in some populations. Primary barriers to engagement were participant burden (task fatigue and inconvenience), physical, mental, and situational barriers (unable to complete tasks), and low perceived benefit (lack of understanding of the value of personal DHTs). More population-specific tailoring of personal DHT designs is needed so that these new tools can be perceived as personally valuable to the end user.

Keywords: DHT; DHTs; adherence; app; application; applications; apps; digital health; digital health technologies; digital health technology; engagement; mHealth; mobile health; mobile phone; participatory; participatory medicine; retention; wearable; wearables.

PubMed Disclaimer

Conflict of interest statement

Conflicts of Interest: CB is a consultant for Depuy Synthes, Bionaut Labs, Galectin Therapeutics, Haystack Oncology, and Privo Technologies. CB is a cofounder of Belay Diagnostics and OrisDx. DRK is an officer, employee, and shareholder of MindMed; a consultant at Tempus, Nightware, and Limitless; and board member of Sonara. RPH is an advisory board member at Bristol Meyers Squibb. MH is an advisory board member for Servier, AnHeart, and Bayer; steering committee member for Novartis; honoraria from Novartis; data safety monitoring committee member for Advarra and Parexel. RG received a graduate scholarship from Pfizer and provided consulting or advisory roles for Astrazeneca, Tempus, Eisai, Incyte, Knight Therapeutics, Guardant Health, and Ipsen. The others declare no conflicts of interest.

Figures

Figure 1
Figure 1
Five key participant engagement barrier themes.
See this image and copyright information in PMC

References

    1. Friend SH, Ginsburg GS, Picard RW. Wearable digital health technology. N Engl J Med. 2023;389(22):2100–2101. doi: 10.1056/NEJMe2303219. - DOI - PubMed
    1. Goodday SM, Geddes JR, Friend SH. Disrupting the power balance between doctors and patients in the digital era. Lancet Digit Health. 2021;3(3):e142–e143. doi: 10.1016/S2589-7500(21)00004-2. https://linkinghub.elsevier.com/retrieve/pii/S2589-7500(21)00004-2 S2589-7500(21)00004-2 - DOI - PubMed
    1. Ng MM, Firth J, Minen M, Torous J. User engagement in mental health apps: a review of measurement, reporting, and validity. Psychiatr Serv. 2019;70(7):538–544. doi: 10.1176/appi.ps.201800519. https://europepmc.org/abstract/MED/30914003 - DOI - PMC - PubMed
    1. White KM, Williamson C, Bergou N, Oetzmann C, de Angel V, Matcham F, Henderson C, Hotopf M. A systematic review of engagement reporting in remote measurement studies for health symptom tracking. NPJ Digit Med. 2022;5(1):82. doi: 10.1038/s41746-022-00624-7. doi: 10.1038/s41746-022-00624-7.10.1038/s41746-022-00624-7 - DOI - DOI - PMC - PubMed
    1. Daniore P, Nittas V, von Wyl V. Enrollment and retention of participants in remote digital health studies: scoping review and framework proposal. J Med Internet Res. 2022;24(9):e39910. doi: 10.2196/39910. https://www.jmir.org/2022/9/e39910/ v24i9e39910 - DOI - PMC - PubMed

LinkOut - more resources